Thursday, 17 October 2019

GUEST POST by Lena for Invisible Disabilities Week 2019

This was originally going to be a very different blog than it is now. I’ve thought long and hard about what I most want people to know about living with invisible disabilities. First I was going to tell you about the struggle to get diagnosed, then I was going to do a list of things not to say to someone with an Invisible disability or illness. You’ll get to read those one day, but this is much more important in my opinion. 

I am here to talk to you about Invisible disabilities and depression. When you look at me you see a healthy 28 year old woman. You see a wife, a dog mom, an administrative assistant, and a blogger. Here’s a sneak peek at what you aren’t seeing.
  • My parents were told I would not make it to 5 years old.
  • Was told I would not make it to 18 years old.
  • I was told I would never get to go to college, get married or have kids. 

This knowledge broke me. Imagine walking through life with an expiration date. A person should not know even a rough estimate of when they are going to die. I did not take anything in life as seriously as I should because I was going to die anyway. The future wasn’t real to me, it was a fictional thing I was not meant to experience. I didn’t plan on adulthood, I didn’t expect to see it and did not prepare myself for it. When it was time to go to college I dropped out twice because I was gonna die anyway. 

Fortunately, I am alive. I am 28 and very healthy thanks to medical advancements in Cystic Fibrosis, and the diagnosis and treatment of my Lupus which was a mystery to us for 14 years. I’ll admit there were huge set backs and terrifying days, weeks, and months over the years. There were hospitalisations I was sure would be the beginning of the end for me, but by God’s Grace, a wonderful family, and doctors who didn’t give up on me, I’m here. I am alive. 

Being here isn’t the miracle it sounds like for me. I am broken now. I have ever lasting diagnoses that I will have to monitor for the rest of my life. Taking medicine every day for less than 20 years wasn’t daunting to me, but taking it every day for the last 28, and the next 50 or 60 is daunting. I don’t have the free time to accomplish the things everyone else does because of this, I spend hours everyday maintaining my ability to simply live. The idea that I may never go two or three months without seeing a doctor or getting blood work breaks my heart. I am blessed to be here, but it’s exhausting.

I look healthy though, so people expect me to have accomplished and succeeded at as much as they have in life at my age. They don’t see that I couldn’t walk around a grocery store on my own for 2 years. They don’t see when my husband had to brush my hair. They don’t see the days, weeks, and months I obsessed over the things I would do if I ever felt better. They don’t see the hours I cry each week because I feel I am wasting my newfound health.

I hate meeting new people because I have to tell them I’m just an Administrative Assistant. I hate getting to know someone because how do I explain the 4.5 years of my adult life where I fought my body every day? How do I tell them I don’t have kids yet not because I don’t want them but because up until recently we were certain I and the baby would die if I were to get pregnant? How do you cover any of these subjects in light conversation? So I am left under-sharing and seeming off-putting, or over-sharing and seeming needy. There is no winning socially when you have an invisible disability or illness hiding inside you. 

Now I’m 28 years old and I am so painfully aware that I want more. I want so much more. I want to be the wife my husband deserves. I want a career, not a job. I want hobbies. I want friends. I want to feel like I am a part of literally anything, because I never have been. I am awake now, and it’s a nightmare. Every minute of every day all I can think is how much of my life has been wasted fighting my invisible illnesses and how much more of it will be spent that exact same way. 

Living a life with Invisible Disabilities is a nightmare I would never wish on anyone. This depression eats you. This is the reality of life with an invisible disability. Now I am faced with an almost insurmountable challenge. Living boldly, and building the life I want to have despite my . It’s the scariest thing I’ve ever faced, way more terrifying than port-a-caths and hospital beds.